People Like You
Contemporary Figures of Personalisation

People Like You

Personalisation is changing many parts of contemporary life, from the way we shop and communicate to the kinds of public services we access. We are told that purchases, experiences, treatments, and interactions can all be customised to an optimum.

As a group of scientists, sociologists, anthropologists and artists, we are exploring how personalisation actually works. What are optimum outcomes? Do personalising practices have unintended consequences?

We argue that personalisation is not restricted to a single area of life and that personalised practices develop, interact and move between different sites and times. The project is split into four areas: personalised medicine and care; data science; digital cultures; interactive arts practices.

People Like You: Contemporary Figures of Personalisation is funded by a Collaborative Award in the Medical Humanities and Social Sciences from The Wellcome Trust, 2018–2022.

Fiona Johnstone

13 February 2019

Fiona Johnstone

13 February 2019

Data Portraits

One of the aims of People Like You is to understand how people relate to their data and its representations. Scott Wark has recently written about ‘data selves’ for this blog; an alternative (and interconnected) way of thinking about persons and their data is through the phenomenon of the data portrait.

A quick Google of ‘data portraits’ will take you to a website where you can purchase a bespoke data portrait derived from your digital footprint. Web-crawler software tracks and maps the links within a given URL; the information is then plotted onto a force directed graph and turned into an aesthetically pleasing (but essentially unrevealing) image. Drawing on a similar concept, Jason Salavon’s Spigot (Babbling Self-Portrait) (2010) visualises the artist’s Google search history, displaying the data on multiple screens in two different ways; one using words and dates, the other as abstract bands of fluctuating colour. The designation of the work as a self-portrait raises interesting questions about agency and intentionality in relation to one’s digital trace: as well as referring to identities knowingly curated via social media profiles or personal websites, the data portrait can also suggest a shadowy alter-ego that is not necessarily of our own making.

Erica Scourti’s practice interrogates the complex interactions between the subject and their digital double: her video work Life in AdWords (2012-13) is based on a year-long project where Scourti regularly emailed her personal diary to her G-mail account, and then performed to webcam the list of suggested ad-words that each entry generated. A ‘traditional’ portrait in the physiognomic sense (formally, it consists of a series of head-and-shoulders shots of the artist speaking directly to camera), Life in AdWords is also a portrait of the supplementary self that is created by algorithmically generated, ‘personalised’ marketing processes. Pushing her investigation further, Scourti’s paperback book The Outage (2014) is a ghost-written memoir based on the artist’s digital footprint: whilst the online data is the starting point, the shift from the digital to the analogue allows the artist to probe the gaps between the original ‘subject’ of the data and the uncanny doppelgänger that emerges through the process of the interpretation and materialisation of that information in the medium of the printed book.

Other artists explore the implications of representation via physical tracking technologies. Between 2010 and 2015, Susan Morris wore an Actiwatch, a personal health device that registers the body’s movement. At the end of each year she sent the data to a factory in Belgium, where it was translated into coloured threads and woven into a tapestry on a Jacquard loom (a piece of technology that was the inspiration for Babbage’s computer), producing a minute-by-minute data visualisation of her activity over the course of that year. Unlike screen-based visualisations, the tapestries are highly material entities that are both physically imposing (SunDial:NightWatch_Activity and Light 2010-2012 (Tilburg Version) is almost six metres long) and extremely intimate, with disruptions in Morris’s daily routine clearly observable. Morris was attracted to the Actiwatch for its ability to collect data not only during motion, but also when the body is at rest; the information collected during sleep – represented by dark areas on the canvas – suggests an unconscious realm of the self that is both opaque and yet quantifiable.

Susan Morris, SunDial:NightWatch_Activity and Light 2010-2012 (Tilburg Version), 2014. Jacquard tapestry: silk and linen yarns, 155 x 589cm.  © Susan Morris.

Katy Connor is similarly interested in the tensions between the digital and material body. Using a sample of her own blood as a starting point, Connor translates this biomaterial through the scientific data visualisation process of Atomic Force Microscopy (AFM), which imagines, measures and manipulates matter at the nanoscale. Through Connor’s practice, this micro-data is transformed into large 3D sculptures that resemble sublime landscapes of epic proportions.

 

Katy Connor, Zero Landscape (installation detail), 2016.
Nylon 12 sculpture against large-scale risograph (3m x 12m); translation of AFM data from the artist’s blood.  © Katy Connor.

One strand of the People Like You project focuses particularly on how people relate to their medical data. Tom Corby was diagnosed with Multiple Myeloma in 2013, and in response begun the project Blood and Bones, a platform for the data generated by his illness. The information includes the medical (full blood count / proteins / urea, electrolytes and creatinine); the affective (mood, control index, physical discomfort index, stoicism index, and a ‘hat track’ documenting his headwear for the duration of the project); and financial data (detailing the costs to the NHS of his treatment). Applying methods from data science to the genre of illness blogging, Corby’s project is an attempt to take ownership of his data creatively, and thus to regain a measure of control over living with disease.

In the final pages of his influential (although now rather dated) book, Portraiture, the art historian Richard Brilliant envisaged a dystopian future where the existence of portraiture (as mimetic ‘likeness’) is threatened by ‘actuarial files, stored in some omniscient computer, ready to spew forth a different kind of personal profile, beginning with one’s Social Security number’ (Brilliant 1991). Brilliant locates the implicit humanism of the portrait ‘proper’ in opposition to a dark Orwellian vision of the individual reduced to data. Writing in 1991, Brilliant could not have foreseen the ways in which future technologies would affect ideas about identity and personhood; comprehending how these technologies are reshaping concepts of the person today are one of the aims of People Like You.

Workshop Event

15 January, 2019

‘People Like You’: Networking Workshop

In recent years we have seen a sharp increase in techniques, practices, and ideologies that seek to ‘personalise’ products and services. ‘People Like You’: Contemporary Figures of Personalisation is a project that has received funding from the Wellcome Trust to track what this move towards personalisation really means.

While there is a rapidly growing literature on personalisation in medicine (Prainsack 2017; Dickenson 2013, Hedgecoe 2004, Hood and Friend 2011, Prainsack 2014, Tutton 2014), social care and education (Leadbeater 2004, Needham 2011), and marketing (Turow 2011), there are few attempts to establish the broad cultural significance of these new practices. For this broad cultural significance to be measured, we are investigating personalisation in digital culture, medicine and healthcare, data science, and participatory arts practices.

We are also eager to engage with academics, policy makers, technologists, and those in private industry to learn about common patterns and differences in style and practice. Our first Networking Workshop allowed an international group of researchers to meet for the first time, to explore personalisation in its broadest definition and outcome.

Below is a summary of presentations and discussions. For full detail of the day, please see our booklet.

 

Session 1

The first session introduced ‘People Like You’ in terms of three key concepts that the group has been considering in its theorisation of personalisation. Sophie Day explained how we were working with the interrelated concepts of ‘tracking’, ‘likeness’ and ‘context’, and how all can be at play when something or someone becomes ‘personalised’. Each of the project members gave examples of how tracking, likeness, and context informed their case studies in digital culture, healthcare, data science, art and art practice. You can read more about those case studies here.

 

Session 2

The next session began with Sarah Cunningham-Burley (Edinburgh) introducing the project Cancer and Society in the 21st Century (Leeds/Edinburgh), which looks at how the molecularisation of disease, as promise and as practice, is affecting patient experience across the health system. Cunningham-Burley highlighted what Mike Fortun has described as the ‘new zones of intensities’ in post-genomics affects how patients form identities and collectives, understand risk, responsibilities, and expectations towards care, research, and advocacy.

Sarah’s introduction to the project found an interesting series of international contrasts with Mette N. Svendsen’s (Copenhagen) work on personalised medicine in the Danish welfare state. Svendsen challenged us to think about how the singular ‘I’ of molecular personhood relates to the ‘we’ of welfarism, the ‘we’ of scientific community and discovery, and the ‘we’ of data use and sharing. Two lines of thought that had animated public debates in Denmark in recent years: first, around substitutes and substitution, the sense of threat that gets attached to the management of genomic as opposed to other kinds of data; second, the question of storage and how this produces pressures to care for and standardise ‘personalised’ data.

The last presentation was given by Giskin Day (Imperial/King’s), whose work on patienthood and gratitude focuses on exchanges between clinicians and patients. This resonated with other presentations’ in this panel’s reflections on the ways that healthcare systems are being datafied and automated. In systems aspiring to personalised care, there remains important inter-relationship between the digital exchanges and face-to-face encounters. For Day, this raises the question: are patients given the opportunity to be grateful? And further, can patients have this gratitude acknowledged? Addressing this question is key to what Day calls ‘bespoke medicine’.

The conversation that emerged from this panel raised familiar anxieties about who gets to participate in medical personalisation, how we might avoid personalisation altogether, or what the outcomes of personalisation might be beyond the transactional imaginary of atomistic individuals. How do we picture and map the systems, networks, and assemblages of people, data, concepts, classifications, and relations? Resisting programmed inequality calls us to have a far clearer understanding of the whole – persons and populations – from which exclusions are made.

 

Session 3

Matías Valderrama Barragán opened the final session with an overview of the work done by the Smart Citizen Project headed by Martín Tironi at the Design School of the Pontificia Universidad Católica de Chile. Valderrama Barragán’s presentation ranged across a number of projects tracking the collection and use of data in Santiago. By focusing on the multiple services used to gather the data of, for instance, cyclists in Santiago, Matías highlighted what he and his colleagues refer to as the creative and even subversive ‘idiocy’ expressed by participants in ‘smart’ projects. Data, his presentation reminded us, can often be put to other uses by those who produce it, redefining what it means for a city or a space to be designed ‘smart’.

Valderrama was followed by Zsuzsanna Vargha (ESCP Europe, Paris) speaking on the recent history of the development of personalisation techniques in the business world. Contrary to claims that personalisation has been driven by new developments in big data, Vargha argued that it can be traced to the emergence of Customer Relations Management technology in the 1990’s in various industries, and its uptake by finance companies in the 2000s. Vargha’s focus on the ‘middleware’ provided compelling background to the kinds of processes that are being investigated by People Like You. Her corollary argument, that personalisation doesn’t ‘depersonalise; interactions between businesses and consumers but is often used to shape interpersonal interactions—by, for instance, telephone-based sales representatives—added a layer of nuance to some of the questions pursued by other participants in the event. Health also employs middleware. How has it helped shaped personalisation in this sector?

The final presentation from invited speakers was given by Francesca Toni (Imperial College) Co-Investigator and Technical Director of the EPSRC-funded ROAD2H project. Toni outlined this project’s development of clinical decision-making support systems, which use Artificial Intelligence techniques in conjunction with patient data and clinical guidelines to assist clinicians in the delivery of services. Toni and her colleague, Kristijonas Čyras, brought computer science expertise to the discussion of how personalisation might be implemented in health contexts. The system they are using will be designed around a form of AI that employs argumentation to optimise its outcomes. This raised pertinent questions: if this system is used by clinicians, how much information should be supplied to patients? What kind of resistance might be expected from, for instance, nurses, if this system was used to help scheduling? Can it be ‘personalised’ for the user as well as the patient?

 

Session 4 (Group Discussion)  

The final session provided an opportunity for all participants to collectively reflect upon themes that resonated across presentations, and to propose ideas for future collaborations. The following points were raised:

  • In addition to tracking, likeness, and contexting, ‘participation’ was proposed as a fourth technique of personalisation or indeed, as some argued, the grounds for personalisation.
  • If participation provides the grounds for participation in personalisation, should it be distinguished from the practice of ‘recruitment’?
  • If personalisation creates novel experiences of tracking or ‘liking’ through recursive data use, remaking contexts for participation, then should we be developing similarly adaptive collaborative methods?
  • We heard a lot about unsuccessful personalisation, but what does successful personalisation look like? And can failed personalisation ever be positive?
  • Personalisation involves being part of a vague whole that is being constantly and recursively rearranged: we don’t know what else is in it, so how do we know what the whole is?
  • Further topics included data ownership, how persons were being redefined by data or how personhood was used to define data; this related to metaphors of storage (biobanks versus bio-libraries, and related notions of ‘public’ versus ‘private’ good). It is important for collaborative research to understand how these concepts and metaphors are shaped differently in different national contexts.
  • Certain organs, tissues, and molecules are invested with more cultural value than others when it comes to putting persons into personalisation: what are emotional and symbolic values invested in strings of DNA and what gives them their power and precedence?

 

This Network Workshop gave us an opportunity to learn how researchers working across the sciences are engaging with the subject and practice of personalisation. We look forward to announcing our future events.

Personalised medicine: the social challenges

One day launch event to a new seminar and workshop series across 2019-2020, sponsored by Centre for Personalised Medicine (CPM), St. Anne’s College and NIHR Oford BRC Partnership for Health, Wealth and Innovation

The idea behind personalised medicine is both simple and powerful: delivering the right treatment to the right patient at the right time. Realising these visions requires both improved scientific knowledge of human disease and illnesses, but also forging of new forms of dialogue, relations and partnerships across often complex landscapes of contemporary healthcare systems. The aim of this new event series is to identify major social challenges surrounding personalised medicine, and develop new knowledge, tools, and solutions about how they might be breached. Every six months an event will be held at St. Anne’s College focusing on a “grand social challenge” of personalised medicine, including the ethics and social practices of data sharing, university-industry-NHS partnerships, and challenges of achieving disruptive changes at scale in healthcare systems. Our inaugural event on 21st March 2019 brings together renowned speakers from various backgrounds to reflect on what they consider acute challenges surrounding realisation of personalised medicine in healthcare systems, drawing on their expertise and experience from the social sciences and humanities, clinical research, industry, healthcare professions, and health policy. We particularly welcome patients and the public to the event.